Mapping the Dementia Journey.

The Mapping the Dementia Journey project involved the Alzheimer’s Society of Ontario in partnership with researchers from the Centre for Education and Research on Aging and Health, Lakehead University, and the University of Waterloo, working with participants--people with dementia, care partners, and health service providers--to construct a visual representation of their dementia journey, a map (shown below).
The purpose of this research was to work with people living with dementia and care partners (including family and health and social service providers) to explore the experiential elements of the dementia journey. This "map" displays the key milestones along the dementia journey,  factors affecting the key milestones, and how these factors influence the journey for individuals, families, and circles of support who are living with dementia. 

Based on the themes inductively gathered from participants' experiences and responses in the Mapping the Dementia Journey project, four main categories emerged:
The System Journey, Changing & Adapting, Relationships & Community, and Focusing on Me

Changing & Adapting

The Changing & Adapting thematic pathway describes the various changes that people with dementia and care partners go through as they move along the dementia journey, and how they tend to go about adapting to those changes. ​

The System Journey

The System Journey pathway describes key interactions with the health care and social service systems as people with dementia and care partners move along the dementia journey. This includes interactions with the medical and long-term care system, government legislation, and other support services. ​

Relationships & Community

The Relationships & Community thematic pathway examined the milestones along the dementia journey that involve changes and interaction with others. ​

Focusing on me

The Focusing on Me thematic pathway encompasses the actions, interactions, and experiences that individuals participate in along the dementia journey for themselves, in order to help them live well and enjoy their lives.  ​
Below you can access the Mapping the Dementia Journey Summary, Final Report, and a Resource Guide for facilitators.

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